Clinical Translational Core

临床转化核心

• 批准号: 9228907
• 负责人: JOHN A. COLOMBO
• 金额: $ 15.85万
• 依托单位: UNIVERSITY OF KANSAS LAWRENCE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-22 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9228907
• 关键词: Academic Medical Centers; Administrator; Adult; Advocate; Age; Autistic Disorder; Behavioral; Child; Child Development; Child health care; Childhood; Cities; Clinic; Clinical; Cognitive; Communities; Consultations; Databases; Development; Developmental Delay Disorders; Developmental Disabilities; Diagnosis; Diagnostic; Down Syndrome; Electronic Health Record; Event; Fragile X Syndrome; Funding; Geographic Locations; Goals; Healthcare; Hospitals; Housing; Human; Human Resources; Individual; Infant; Institutional Review Boards; Intellectual functioning disability; Kansas; Laboratories; Link; Maintenance; Mental Retardation and Developmental Disabilities Research Centers; Mission; Narration; Parents; Participant; Patients; Pattern; Phenotype; Population; Prevention; Process; Rare Diseases; Records; Recruitment Activity; Registries; Research; Research Personnel; Research Project Grants; Research Support; Resources; Rett Syndrome; Sampling; School-Age Population; Schools; Science; Scientist; Services; System; Translational Research; Universities; University Hospitals; Work; age group; autism spectrum disorder; base; cost effective; design; experience; genetic information; high risk; meetings; programs; prospective; repository; school district; success; tool; translational study

The Clinical Translational Core (CTC) of the Kansas Intellectual and Developmental Disabilities Research Center (KIDDRC) seeks to directly serve and facilitate translational research functions within its portfolio of projects. The CTC is designed to meet the needs of the work in those research themes by centralizing, integrating, and standardizing a set of functions that will allow KIDDRC projects to recruit well-characterized participants for its portfolio of human translational studies in an efficient manner. While these services will facilitate work by investigators already conducting research with human participants, they will also be extremely valuable to basic scientists who have not previously conducted research with human populations, as they provide a means for identifying individuals with Fragile X, Prader-Willi, and Rett Syndromes as well as capacity for the deep phenotyping required for supporting research on IDD subtypes and rare disorders. The objective of the CTC is to provide high-quality, cost-effective support to KIDDRC research programs in the recruitment of well-characterized participants with IDD and controls. Given the KIDDRC portfolio, the CTC emphasizes recruiting pediatric samples, but we also provide capacity to recruit adults with IDD. To achieve this, the CTC has established the goal of providing KIDDRC PIs with greater access to potential participants and with ongoing support with tools to facilitate recruitment and retention of individuals with IDD into their studies. This objective is being met in several ways. First, the CTC will provide KIDDRC investigators with access and assistance in identifying potential research participants through four registries: (1) an integrated data repository linked to electronic health records at KUMC, as well as to other regional databases that access records of individuals with IDD; (2) continuing to build a registry based on a regional clinic to which children are referred for a potential diagnosis of autism spectrum disorders (ASD) or developmental delays (this registry will be integrated with the KUMC repository); (3) a registry of facilities that house, advocate for, or otherwise serve individuals with IDD across Kansas and 14 other states derived from a partnership with the Kansas University Center for Excellence in Developmental Disabilities (UCEDD); and (4) centralization and maintenance of a registry containing information on typically-developing (TD) infants and children that has been used to support normative research on developmental science. The core will also provide support for investigators needing assistance with human behavioral phenotyping of IDD conditions, by assisting investigators with establishing and maintaining partnerships with school districts in Kansas City-Lawrence-Topeka corridor, and by sponsoring investigators’ presence and visibility at community and commercial events targeted to specific populations and age groups.

堪萨斯州智力和发育障碍研究的临床翻译核心(CTC) 中心(KIDDRC)寻求在其投资组合中直接服务和促进翻译研究职能 项目。反恐委员会旨在通过以下方式满足这些研究主题的工作需要： 集成和标准化一组功能，使KIDDRC项目能够招募具有良好特征的 以高效的方式为其人类翻译研究组合的参与者提供支持。虽然这些服务将 促进已经与人类参与者进行研究的调查人员的工作，他们也将 对于以前没有进行过人类种群研究的基础科学家来说，这是非常有价值的，因为 它们提供了一种识别脆性X、Prader-Willi和Rett综合征以及 支持对IDD亚型和罕见疾病的研究所需的深层表型鉴定能力。这个 CTC的目标是为KIDDRC的研究项目提供高质量、高成本效益的支持 招募特征良好的IDD和对照参与者。鉴于KIDDRC的投资组合，CTC 强调招募儿科样本，但我们也提供招募患有IDD的成年人的能力。要实现 为此，反恐委员会确立了目标，即向KIDDRC PI提供更多接触潜在参与者的机会 并不断提供支持，以促进招募和留住IDD患者进入他们的 学习。这一目标正在以几种方式实现。首先，反恐委员会将向KIDDRC调查人员提供 通过四个登记处获取和协助确定潜在的研究参与者：(1)综合 链接到KUMC电子健康记录以及访问的其他区域数据库的数据储存库 IDD个人记录；(2)继续根据儿童所在的区域诊所建立登记册 因自闭症谱系障碍(ASD)或发育迟缓的潜在诊断而转诊(该登记将 与KUMC存储库集成)；(3)存放、倡导或以其他方式提供服务的设施的注册表 堪萨斯州和其他14个州的IDD患者来自与堪萨斯大学的合作伙伴关系 发展残疾问题卓越中心；和(4)集中和维护一个 包含关于典型发育(TD)婴儿和儿童的信息的登记表，用于支持 发展科学的规范性研究。该核心还将为需要的调查人员提供支持 通过协助调查人员确定缺碘缺乏症的人类行为表型 并与堪萨斯城-劳伦斯-托皮卡走廊的学区保持伙伴关系，并通过 赞助调查人员出席针对特定目标的社区和商业活动并提高其知名度 人口和年龄组。